This is the journey of a life loving Cfer..who received a second chance at living a full life after my double lung transplant in March of 2010!! Just the everyday ups and downs of living a life with Cystic Fibrosis and taking advantage of this time I have on Earth now that I can BREATH!!!

6 months post transplant :)

Thursday, August 26, 2010

It's the little things....:)

Growing up having CF, you're doing treatments every few hours and devoting most of the your day hooked up to machines. You don't really know any other way to live. You don't know what it's like to wake up and just leave the house. You have to plan your day according to how many oxygen tanks you need to bring with you and how long you will be there. You have to cut everything short, just because you start to feel "junky" or you have to get home and get some airway clearance. But there is always tons of medicines and treatments to do before you can think of doing anything else. It becomes routine. After transplant your daily routine changes dramatically. You literally find yourself lost, because what you normally fill your time with you're no longer required to do. It's kind of funny, but it's been a big adjustment for me! It's been so weird not doing hours of treatments everyday...not that I'm complaining...but you are leaving behind the only life you've ever known. It's almost a mourning process that you go thru...because you must shift your life so dramatically. The first time I had to take my oxygen off to start breathing on my own I was actually terrified! I didn't trust my new lungs yet...they weren't 'mine' yet. It took me a while to trust them to do the job efficiently for me completely. It was so weird for me to think that this could actually "work" as a cure for my shortness of breath. But so far it has! My docs have continued to stress to me tho that a lung transplant is NOT a cure for Cystic Fibrosis. You are just simply trading one set of problems for another. Getting a new pair of lungs would also not cure the digestive complications that CF causes. In my case, my stomach has gotten a bit worse. I do have a lot more problems with my digestive issues than I did before. Now, I don't know if that's because of transplant or if it's just my cf worsening. It may just be a coincidence. I definitely would love to hear anyone else's views or experiences on this topic. I've heard a lot of other cfers GI issues have gotten worse also after having their transplants...but one of my pulmonologists disagrees that it has anything to do with the transplant itself. Who knows?? I don't! :P But there is a lot of different ways to look at having CF. I know a lot of peep who have it and they complain, "Why me?", "What did I do to deserve this", "Gods punishing me", "I wish I was someone else", Blah blah blah...I try to look at it in a different way. Sure, I've said some of these things from time to time. It's very hard living with this disease and it takes a lot of wonderful people from us day in and day out. Everyone is allowed to have their weak moments. I've come to convince myself that I don't think I would be the person I am today without having it. In a way I think it's humbled me. And it's brought me many wonderful things too. A lot of amazing people who work in the medical field, I probably would have never met without having CF, and a lot of great success stories of transplants and CF survivors...I would have no idea about things like that. It's opened my eyes to so many things I don't think I would ever choose to live without. I try to appreciate the little things in life that other peeps take for granted each and every day. I love that I see life in a different way. I owe it to CF for actually allowing me to be extremely close to my siblings. I had an older brother with cf, Chris, who passed away in March, 2007. I also have an older sis, Laura, who also has it. I've seen first hand what CF can do, so I'd like to cherish every moment. I'm still getting over his death, it was extremely devastating on our family. I'm not sure that I will ever get over it. It continues to get better but there is always going to feel like something is missing. There is a piece of my heart that will be forever vacant and no matter how you try to fill it it's just never completely full again.:( Every birthday, every holiday, and every milestone...they will just never be the same. But CF is definitely a bond that we all shared. We sympathize with each other, and always had a pretty good idea of what the other was going thru. It's kind of a blessing to be able to share that with each other. I helped a lot growing up..it would have been so much more difficult if I had felt like I was alone in all of this. That's one reason I really cherish the CF community online. It's so important to be able to ask others what they are going thru and to be able to relate to one another is priceless. And we can even laugh about it! It's very comforting.;) That's all for now:) bye <3